Most of what you’ll read here is life and fun, with episodes from my past, amusing and serious. But I have an unwelcome stranger lodged in my brain, as you’ll find if you explore my stories. Our destinies are interlocked, but its deadly presence reminds me every minute that each day of life is a miracle. This is my space to reflect on life, and an interactive area where we can share our experiences freely. Without you, this blog has no reason for existence. Carpe Diem!

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Sunday, October 3, 2010

That first seizure - final part

How easy it is to believe what we want to, especially based on a sample of one! Tracey was more realistic, especially having had to deal with something far worse some 17 years ago. But that’s a story she should tell. Fast forward….

Friday morning, 4 December 2009. I could see from my hospital bed that Dr Diez was in a huddle with two other doctors down the hallway, looking at my scans and talking animatedly together.

One of the doctors was a young woman, whose face I will remember vividly for the rest of my life. They came into my room and Diez put the options. I could stay in the hospital over the weekend and be sent by ambulance for an MRI to Tamworth on Monday.

Well, that was his option – we had another. I would be discharged later that morning, spend the weekend at home, and we would get to Tamworth under our own steam on Monday for the MRI. No way did I want to spend a whole weekend in the hospital twiddling my thumbs when home was 5 minutes away.

Diez accepted that. I looked and felt in pretty good shape. We discussed my case, but frankly, I don’t remember all that much about it because I felt that we needed the MRI and hard information to know what we were dealing with.

‘Brain tumour’ of course came up. Diez and Tracey had discussed it in some depth the night before, while I was sleeping like a baby.

But as the doctors left, the young woman doctor turned and looked into my face. In her eyes I saw something she would never have meant to convey. It was empathy, pity, sorrow and more - a sort of dread; it said, you have no idea what’s ahead of you – not that she would ever know that I divined this from her face.

It was all in one fleeting glance, totally unexpected by me, and it went to my core. She knows or has guessed something from those CT scans, I thought, and I’ve been hiding from it. I could not help but absorb it, it felt, in every cell in my body.

Christmas Eve, 2009.

A phone call from the neurologist in Newcastle. Tracey took it.

'I have the result of the biopsy after the craniotomy last week. It's malignant. A Glioblastoma Multiforme.'

I don't know about you, but I have had this sort of experience in the distant past - where I have read an article, or a goodly portion of it, have become fascinated by it, so I've photocopied it, and filed it carefully with the intention of reading it again from start to finish. It feels secure: I can read it any time I like. But there it has lain, in the filing cabinet, untouched ever again, pure as the driven snow. It's as if all that's required is to have it in your possession to process it mentally.

That's nonsense of course - you simply fail to make use of it, beguiled by the fact that it's right there in the filing cabinet, ready to open at any time.

So it is with pdf files I have made from brilliant online articles, they are ready to read, should I feel the desire to, on my computer. And with video programs downloaded completely from the ABC's Big Ideas, brilliant insights I have turned into DVDs.

There they sit. I have seen the abridged version on iView, and I want to see the whole thing. It's right there, next to the DVD player. But I have other things to do. Even, God help us, like watching Judge Judy and the strange people she deals with.

Why bring this up? Well, I think blogs can easily fall into the same category. I have had some friends who have directed me to their blog, which I DO want to read, but knowing I can go there at any time seems to be enough. Others I devour on the spot.

I suspect that the fate of many blogs is to lie in that mental filing cabinet, unread and unwanted. Mine certainly will be for many people. And of course, that's how it should be if it has little relevance to their lives. As you see, I have done the same thing.

How on earth do people like that become Doctors? First of all to call on X-Mas Eve (though understandably you wanted to know as soon as possible), then second of all to take the other call, then third to not even give you a glimmer of hope. There should be a prerequisite that they have to be good with people, otherwise they can't graduate. I'm very glad that he was wrong on that last count. Much love and hugs to all of you. xoxoxooxoxoxoxo

In defence of the surgeon, he was the busiest person I had ever seen in a hospital, called in hour after hour to perform delicate brain operations far beyond what should have been the case. I would not even have asked for a life expectancy figure, except in the vaguest ballpark way, as they simply can't know. It was a mistake on his part to try to be so precise, to take another call, and probably the timing. Still, I would rather have a good surgeon with bad bedside manner than an inferior one who made you feel good. But I can well understand Tracey's resentment. She was the one taking the punch, with a beautiful Christmas tree full of hope crushed in the lounge room...

In a horrible sort of way, your account of the first seizure and aftermath is compelling reading. As for the surgeon; well I can quite understand poor Tracey's feelings but judging by several friends and relatives in that profession, it seems often to go with the territory! The greater their surgical skill, the fewer their people skills...in truth I've come to mistrust surgeons who are too charming! They strike me as too much like American actors playing doctors! With Bob's many operations in recent years, it was the most charming surgeon who did the lousiest job! Whereas the rather gruff, uncommunicative even slightly weird surgeon did a great job with a tricky op. Perhaps the constant exposure to other people's pain desensitizes them, in their own defence. or maybe they're just born that way! Reading your account makes me realise just what an appalling shock the diagnosis must have been to you both. Amazing coincidence that your daughter, too, should have had a brain tumour - thank goodness it was benign. Your cool ability to analyse all this and write about it is impressive...so glad to learn the hateful seizures seem to have taken a back seat...

Dear Uncle Den,I will miss reading your posts. I am not sure why, exactly. Maybe as I seem to remember reading somewhere quite recently, we all have good intentions of keeping in touch...just time seems to get in the way? I can not say exactly why I have felt so compelled to read your blog each day, but I do believe it has made me feel closer to you in some way - to share personal experiences the way you have..Hugs and best wishes coming your way!!!

Dear Anne, there WILL be more postings, unless fate decrees otherwise. I meant that I was finished only with describing that first seizure. I have other things to say and I hope you continue reading! Today has been a very difficult day. I will write more on that soon. The goalposts have shifted in the past 24 hours.

I can relate to Tracey's sentiments - I'd be equally livd - and was, as I had a similiar experience with my mother. Doesn't the Hippocratic Oath say "First Do No Harm"?! For me, that extends to all aspects of the relationship/communication betweens physican and patient/family ... to be able to empathise - especially on Christmas Eve (!) ... to not lose your humanity ...

Hi, Denis,Wow, what a journey! I guess I'm with Tracey on the idea that the surgeon could stand to work on his people skills. Granted, surgeons aren't known for their people skills (and oncologists are usually better at giving this sort of news), but still. It's his job to be delicate. AND taking a phone call in the middle of it all was inexcusable. You weren't having a conversation about your dry cleaning after all.

I guess I was also surprised they didn't do a head CT or PET when you first went to the ER, since they clearly had no idea what was causing your seizure. I guess that's what I would've done (not that I'm a doctor). But I suppose you were jerking around too much to be able to get a decent reading. Just reading about your two days seizing made me exhausted. I've seen epileptics go through that and their seizures don't usually last as long.

I'm so sorry to hear you have GBM. It's a tough disease and prognosis is always poor. I suppose that means every second, minute, hour, day, and month is a gift. Like with the news about the new targeted therapies for melanoma they've been talking about this week, there's always something new around the corner.

I'm glad to see you're still blogging--and fighting! All the oncologists and onco teams I know have said this--they don't know why but they've all seen the positive results of a positive attitude in patients. No one knows why, but it's made a difference!

Famin: thanks so much for your interest. They did a head CT immediately the seizure stopped. No, it wasn't 2 days, it was 2 hrs. During that time we were at the Casualty section, and I under close observation. For some reason, it took them a very long time to administer the anti-seizure drug by infusion.There are new treatments round the corner. It will be very different within a decade, I think. Positivity and great care have done a great deal. We will deal with things as they come along. I don't pretend they are great right now but I have been at this point before.Lovely to talk again after all these years, even if not under great circumstances!

Some iPads simply refuse to post responses. I have no idea why, but be aware of this.Word verification has been enabled because of an avalanche of spam. SAVE or compose a long comment elsewhere before posting; don’t lose it! View in Preview mode first before trying to post.

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Former historian in Asian studies, comparative religions, movie-maker and observer of the world as we have changed it. I’m now dealing with a GBM (4): the most aggressive form of brain tumour. It should have got me months/years ago, but we’ve fought it and I’m still here! I aim to use this experience to try to illuminate life as well as demystify the journey. Twitter: @deniswright